What would you advise for this situation? DAS or no?

[sleepingbean]

Oh, also, do we have to go to the wheelchair area for parades, or can we go to our normal spot in advance? Just curious as the wheelchair spots seem to fill up fast and we like where we normally watch parades and I think it would work fine to have a chair there. I wasn't sure if we'd be asked to move?

 

[geek+nerd]

Oh, also, do we have to go to the wheelchair area for parades, or can we go to our normal spot in advance? Just curious as the wheelchair spots seem to fill up fast and we like where we normally watch parades and I think it would work fine to have a chair there. I wasn't sure if we'd be asked to move?

Nope! You can watch from wherever you please.

 

[SueM in MN]

Nope! You can watch from wherever you please.

Yes - those handicapped viewing areas are an option that some people choose to use, not a requirement.

 

[sleepingbean]

Good good.

 

[Mommee]

Sleeping bean I'm another bendy and I've found that preemptively wearing a sling when a shoulder is acting up helps immensely. It can support the joint in the proper position without straining the muscles, and it's a reminder that I'm not stable enough to be reaching for or carrying anything. I also wear both wrist braces while at Disney whether or not they're currently giving me issues. I'm pretty good at putting my shoulders back in most of the time, but when a wrist goes out I'm stuck for 2 days usually.

 

[sleepingbean]

Thanks, Mommee! For kiddo, slings don't cut it, but she has immobilizers that help a bit. However, she can't use her upper body when wearing both immobilizers. I am going to talk to her med team to see if they can customize her a smaller zip up support vest, as the ones they prescribed were too big. I know it won't stop the dislocations all together, but if it helps keep some subluxing from turning into dislocations, it will be worth it! And kineseo taping knees helps a bit, there. I hear you! So frustrating for you with the wrist when it goes I couldn't imagine letting a dislocation go for 2 days. We would be in the ER before an hour was up! OUCH! We will definitely bring her immobilizers, though.

 

[clanmcculloch]

If she's going through one of her periods of time where she's dislocating several times per day then get the DAS. Waiting where you'll have an easier time moving aside or even going somewhere more private if that's important to her would be beneficial. If she's having a good spell then just don't use it. Having it gives you that flexibility if you need it. At this point I suspect she's pretty much guaranteed at least a couple dislocations during a trip with the way her shoulder has been popping out this year. In your shores I'd plan as though it will happen.

 

[clanmcculloch]

We used FP+ for MSEP. It felt a lot less crowded and we were right up to the rope without a long wait. It was great. We stayed there for the castle projection show and Wishes. From down in DD13's chair the bottom of the castle was blocked by heads but she could see everything else well. The down side ease leaving. People practically sat on her as the pushed to get by. Bean could easily get hurt in this kind of situation and even if you just stand still to let people pass, people can be really pushy and you're right in the middle of the mob as they try to exit.

 

[sleepingbean]

Trudy, I am sorry to hear that people were so pushy with your daughter! We have seen that even here in Chicago while out and about, at the zoo and so on. It shocks me that people don't respect immobilizers and wheel chairs. Little kids (2 siblings) were literally jumping over her legs. What on earth were they thinking and why didn't their parents stop them?! We will take your advice and be very careful. My husband, a big guy, is good about being her personal blocker in such situations. People don't generally bump into him, willingly LOL He's her personal body guard in crowds. He goes in front, I follow behind. It seems to work well.

 

[goofieslonglostsis]

Trudy, I am sorry to hear that people were so pushy with your daughter! We have seen that even here in Chicago while out and about, at the zoo and so on. It shocks me that people don't respect immobilizers and wheel chairs. Little kids (2 siblings) were literally jumping over her legs. What on earth were they thinking and why didn't their parents stop them?! We will take your advice and be very careful. My husband, a big guy, is good about being her personal blocker in such situations. People don't generally bump into him, willingly LOL He's her personal body guard in crowds. He goes in front, I follow behind. It seems to work well.

Get her and yourself a crash course religning (sorry cant remember the english word right now) from either a treating ortho or experienced trauma and/ or er specialist.

Not just so you know how to do this safely (not all own learned ways are safeat) but also to learn proper te hniques per type of dislocation and personal situation. With that combined with her needing to be able to relax her muscles somewhat (fast learned when finding out this also hurts less during and after) you will find a myriad on options to relocate while sitting, standing, you name it. Also will get you both aware of reducing (risk of) damage, pain etc and what the warning signals are to NOT attempt yourself in some high risk situations.

Learn strategic moving. Both of you, since youll probably be pushing? Whether standing or in a mobility aid, you can have a huge influence in upping the odds of accidental bumping or reducing.

I did most of my wdw/park time solo. Dislocate hundreds times a day. Will simply reallign whenever, where ever thanks to some good guidance. Needing an alteration of position requiring me to leave the spot Im on is perhaps one in 15.000 and out of that 1 out of 1500 needing medical care. Can count the bumps on my fingers after 7 trips (around 150 days) thanks to how I position myself when moving in a crowd, bus, boat, monorail, line etc. Unfortunately cant do lines anymore since a few years some life threatening issues came to the stage but a "mere" dislocation was nothing that tended to stand in my way. Much easier way of life, less pain due to better reductions but also much less shortterm and longterm damage done. Incl stuff like swelling.

This will pay off beyond wdw obviously but not just in situations in crowds. Good therapy on this subject where need be will allow her to transfer it to all situations that can trigger. Wont nor cant prevent all but can greatly reduce number of issues and the depth of it.

With regards to the icing; if tackled (most) types of dislocations with on the spot relocating, tackle this one with on the spot icing. Plenty iptuons available nowadays that are mobile and can hold its temperature enough for hours or even more than a day. Again something that transendes wdw and can become part of her where-need-routine and greatly improve dealing with what need be but without having to rush elsewhere and drop everything.

 

[sleepingbean]

goofieslonglostsis - we have asked multiple docs about methods for reducing, and we don't get much help with that. I am not sure why, but so far, the PT has been our best help. The ER showed her a trick that works, but caused additional dislocations elsewhere when she did it, so that was no good. We are still looking for the doctor that can guide us through the reductions and in the meantime, she is lucky that she can reduce her own shoulders at this point. We have had many ER trips, but she has always been able to reduce with instruction or assistance (without force from another person). Hopefully that will not worsen.

 

[blondietink]

Yes. The crowds leaving after a parade/fireworks can be very pushy. We stay where we are, while us adults protect the chair, or we push the chair to a spot we find that we can successfully protect it. Sometimes helps to go against the crowd for a bit to find an empty spot. then we wait 20 minutes or so until the crowd dissipates quite a bit before we attempt to leave the park. Do some shopping on the way out to further reduce crowd levels.

 

[goofieslonglostsis]

Shame! Keep asking though when running into new specialists that are aware of eds risks (big one!). Be aware of limited knowledge and experience of pt's on this.

If you have proper medical schooled relatives or friends (related specialty level preferred), reading up on publications can be another way. For instance there is a technique which uses gravity to reduce shoulders. Takes some getting hang off and being able to physically relax but amazing technique that is low risk, low pain and easy once skilled. Works for all possible directions of dislocation and will most likely first only work lying down but can be done seated.

There's also a relative "new" (read not decades old) technique for shoulders not commonly known on the er or by orthos but actually tropic specialist! Having no hospitals etc close by requiring working in the field resulted in this being used and made succesfull. It kindly manipulates shoulder and surrounding area by hand, no pulling at all. Which is a biggie in any reduction. Most times it is not the dislocating but the force used to relocate that damages more in those with eds. Very simply put: by pulling they tear multiple micro trauma sites into connective tissue, muscles etc. Muscles being tightened due to pain etc. causes even more counter force in that spiral.

For those er trips; keep asking about both crash course and if positive their knowledge and experience (zero about and with eds is easily asking for troubles since reducing does have some different risks etc in those of us with eds). Found those who are trained and skilled in the less invasive techniques most willing to teach and aware of importance of that. So whenever they reduce without pulling (manually or with weights) but "kindly manouver by hands on) those are the docs to talk to.

Given the lack of education youve gotten (not out of the norm sadly) : have you both been educated about splint and brace usage risks? Using a splint or brace allows for the muscles not to have to work. Feels nice at the moment but huge longterm risk. Loss of muscle strength is realistic (higher than in "average" individual) which in and of itself will cause a negative spiral of easier dislocation etc etc. These types of aids need proper knowledge, education and guidance that focusses on both short term and long term aims. In some situations it can be warrented for short term but always combined with a treatment plan of upkeeping surrounding muscles in both strength and usage. Anyone that thinks longterm is an option? Run Forest, run. They might mean well but lack base knowledge and experience which will result in things spiralling out if hand for that joint and can also cause increase of issues of surrounding joints (now getting a new heaver demand needing to compensate somewhat for the spkinted joints task).

 

[sleepingbean]

Blondietink, sounds like a good system. We usually stay toward the back and leave a little early, which helps, but our kiddo can't ever stay awake long enough to watch the parades anymore (at night)! So it hasn't been a big issue. We will be cautious, though.

goofieslonglostsis -
The laying down relaxing technique sounds like what the PT has her do, but she has only been able to successfully do it with him and not on her own. I am not sure why? Of course, we'll keep asking everyone we encounter. We do have some great medical people on her team, but they are reluctant to teach us this. maybe they worry we will mess it up? But this is her reality, so we do need to learn a better system than our current.

As for bracing, we have learned the hard way how quickly brace use can create more problems, so we try not to keep it on any longer than needed. Right now we are doing a compromise system of wearing them at night, and not in the day (because she rolls onto stomach and dislocates at night, otherwise). She had 2 good days in a row, so we will keep with this system. Sometimes she needs to wear the braces longer, but we get them off and begin PT as soon as we can, and this last session the braces weren't stabilizing the joint so we just had to take them off and begin working the muscles sooner and very slowly. What a bizarre ride it has been. I am beyond happy to see her have 2 good days in a row, though, and I always hope it will be the start of a LONG good stretch.